Being admitted to hosptial

Just got back from an appointment with my doctor, and he is immediately admitting me to hospital (state hospital care is free in NZ, but can take a while, unless you are chronic and your Dr admits you). Apparently my Calprotectin levels are very high, I am in constant pain and my D is out of control. After almost 20 years of being told I have IBS, hopefully I can find out what it really is! I am actually really scared that the hospital will find nothing wrong with me :-(

Hello Boon. Hopefully, the hospital has since admitted you, and that you are at least getting your pain managed. It was very wise of your doctor to admit you, and I think that since he/she feels that something other than IBS is going on, then the hospital will be taking a closer look to help find the cause of your troubles.

I'm wishing for a happy ending for you. Twenty years is a long time to be guessing at what is wrong.

Hi there, sorry you've been going through it for so long hopefully now you will get the treatment you really need and you get relief from your symptoms. Good luck in hospital, please let us know how yo get on, take care :ghug:

Hopefully they will find out what's wrong soon. Chances are they'll run tests often while you're in there and likely put you onto a liquid diet (if that, they may want to just do TPN for a while for running tests and to help decrease your symptoms). Take care and keep us posted when you can. Try to get as much sleep as possible as they keep you up at night for vitals and blood draws. If you can have someone bring you your own pillow from home cause the ones they have there are awful and if you have your own bed time clothes you can bring those instead of having to wear a gown all the time.

Quick update: Been in hospital two days now, but even morphine is not diminishing the pain. I've had to listen to some of the doctors telling me that all I have is IBS. Well, had a CT scan and the results show a blockage in my small bowel. I'm being transported to the surgical team at another hospital for further investigation. All this leaves me with more questions than answers. Amidst the pain and fears I have, it is comforting and assuring that there are people whom I have never met, all around the world - that know, understand and care about me. Each of u who reads ( and hopefully replies ) to this update - means a real lot to me. I will try to bring an update soon. Rog

Sorry to hear about the blockage. D: I know those can be extremely painful. Its possible that they may try to bring down any inflammation with IV steroids yet that may not be quick enough so its very possible that you may have to have a resection before your bowel perforates (hope it hasn't already but I imagine the CT would have shown if it had). I'm really sorry and hope that you get some pain relief and real answers very soon.

For blockages I have had no luck with morophine. They end up using dulaudid instead. Hope you can figure those out from the misspellings. I have read others too that have found manageable relief with it. It does not take away the pain, only helps tone it down for bits of time. Hoping the best for you. Blockages are no fun.

PS: That is only for pain management, not for the blockage and crohns itself

Good luck will be thinking of you, take care.

I wouldn't worry too much about surgery. If you have only a small blockage, surgery to remove it shouldn't pose too much of a problem and you can most likely lead a very normal life afterwards. (I am assuming that meds at the hospital don't resolve the issue). Good luck in either case with your hospital time, and best wishes for a speedy resolution.

Wishing. You the best I hope you feel better soon

Michele

Good news. Looks like the blockage cleared itself. Lol. Back to my normal self now. Been 12 times in last hour! Not even 2 x Fleet could shift it yesterday. Now they can do the endoscopies and hopefully get a diagnosis and treatment plan

good to hear the blockage has cleared, have they discharged you? Hopefully they will just go and do the tests while your already there, seems it would be a hassle otherwise.

Hospitals don't normally do scopes. They'll do CTs, MRIs, X-Rays etc but scopes are usually done at another medical building filled with people who are getting scoped that day. My guess is he'll be discharged if not already and have an appointment set up with a GI first or go straight to scoping (still need an appointment set up).

Hope you get your scopes soon. Keep us posted on the results. Also try to get a copy of your CT scan results. It may say what caused the blockage such as inflammation or scar tissue etc. Make sure your GI gets a copy as well.

20 years, wow! You have suffered a long time, I hope they can get you feeling better and resolve your problems. Hang in there, and stay strong!

Update: Still in surgical ward, but should have the GI specialist come today and then have colonsocopy and endoscopy. Sigmoidoscopy was clear (even though I've had boils outside and inside) which is good news. CT scan results are: incomplete small bowel obstruction, dialated loops of jejunum up to 4.6cm on r/h side, Mesentery Swirls and Sub-Acute Internal Hernia. I've got to be honest, the above items, combined with GORD, Hiatis Hernia, Nissen Fundoplication and the last 18 years of constant chronic D and stomach pains - does NOT sound like IBS to me What do u think? (LOL, I cant read the screen properly. I suspect this is the Morphine

Geez, I am so sorry you are going through all this. Why the heck would they do a sigmoidoscopy when they plan on doing a colonoscopy? Seems like that was a waste. I am glad it did not show much. I guess the colonoscopy will be better at seeing the entire colon. I hope they can find out what is wrong and get you on a treatment plan so you can feel better soon....

Boom said:

Update: Still in surgical ward, but should have the GI specialist come today and then have colonsocopy and endoscopy. Sigmoidoscopy was clear (even though I've had boils outside and inside) which is good news. CT scan results are: incomplete small bowel obstruction, dialated loops of jejunum up to 4.6cm on r/h side, Mesentery Swirls and Sub-Acute Internal Hernia. I've got to be honest, the above items, combined with GORD, Hiatis Hernia, Nissen Fundoplication and the last 18 years of constant chronic D and stomach pains - does NOT sound like IBS to me What do u think? (LOL, I cant read the screen properly. I suspect this is the Morphine

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You have a hernia too? D: I'm going to tag Afidz in here in case you have any hernia related questions (she's had too many but luckily the hernia ride is finally over for her). Keep us posted.

Yes, like Jennifer mentioned, I have become quite the expert in regards to hernias. So if you have any questions, feel free to PM me. Although I am not sure what you mean by Sub- acute internal hernia. But my best advice, regardless of what kind of hernia it is, get it fixed asap to avoid further complications.
EDIT: I looked up Hiatal hernia- and from what I have gathered it is not generally a cause for concern nor does it require surgical intervention. But, my my standpoint, my concern is that since it is your stomach breaking through your diaphragm, it could crowd out your lungs making it hard to breath. I have heard of this happening before, but before I go and talk about it I need to verify the details of the particular case. So I will get back to you on that.
http://www.webmd.com/digestive-disorders/hiatal-hernia

Hi Afidz. Sorry, I might have not been the clearest. Blame it on the morphine . I developed the hiatis hernia in 1994 after a nasty round of GORD that lasted around a year and meant vomiting involuntarily after any food or drink. The nissen fundo created the new valve and I haven't vomited even once over the last 18 years, even though at times I needed to. The surgery started lapara, but after four hours they opened me up. My latest Dr suspecs I've had IBD from childhood and the issues that caused the surgery are a part of that. Hopefully I will see the GI specialist tomorrow.

I am in the same hospital room as I was with the nissen 18 years ago. At that time - after surgery, they wanted to discharge me, but I told them things were worse and the D and pain won't stop. They kept me in another week, my symptoms didn't improve so they sent me to the hospital psych, discharged me, told me to come off my meds (motillium and omeprezole) and not to worry about the d and pain.

So here I am back at the same place I was 18 years ago.

Literally.

Same room.

Same chronic illness and symptoms that I left with. I still feel no one has taken my D and pain seriously.

During those 18 years I have had around 10 normal stools. Every other day I have had chronic d and pain, spending on average 1 to 2 hours on the toilet. I am afraid of going to the mall or travel, as many times I have not reached a toilet.

Sorry for the ranting.

Its hard watching other patients in my ward who never think for a minute they won't recover and get better.

I never got better :-(

Hey Boom!
I sure hope they get to the bottom of this now and get you all fixed up and feeling better. We are thinking of you and wish you the very best. keep us posted,OK?

Boom I hope they get to the bottom of this ASAP and start a plan of treatment. Don't let yourself suffer for another long amount of time, get another opinion if you have to!

Just saw the GI specialist. He says I have the worst case of IBS he has ever seen and there is nothing he can to help me :-(

OK. Had my meltdown. Time for a plan. Its not that I am upset at not getting the diagnosis I expected. I am upset because at least if it was/is IBD, there are more treatment options to try.

So, I will go to a private GI Specialist for a second opinion. I know there are types of IBD that don't always show on the standard tests. Even if the diagnosis is still IBS, I think a private specialist might be a little more helpful and allow me to try some different treatment plans.

With IBS only microscopic inflammation has been found in SOME patients. If they've located any visible inflammation at all in any of the tests then its likely not IBS. I'm glad you'll be getting a second opinion. Continue keeping us posted when you get a chance.

You saw the GI but no scopes done? No biopsies (wont have the results from those for a while so I don't see how the GI can say IBS without proper testing)?

hi Boom, forgive me if you have, but have you tried different diets? a lot of the time diet can be very effective for ibs, and definitely go for second opinions. hope yu feel better soon bud

Hi team. Yes, there is inflammation and elevated Calprotectins, but the specialist says this could b because of the obstruction, but does not know what or why it is obstructed.

Yes, over the last 18 years I have tried all the diet alternatives and options, and was on a total fluid diet for around 2 years until becoming intolerant.

I think it is premature of this specialist to discard me before the endoscopies and biopsies.

Absolutely, the biopsies will tell the story. When do you get the results back?

Haven't had the scopes or biopsies yet. Hopefully have the colonoscopy while here in hospital, and the small bowel once this obstruction and inflammation is healed.

I'm sitting in the hospital bed, lights r out (its Thursday 8th here) and just watched Salmon Fishing in Yemen on laptop.

Needed something with a happy ending

Have a good day Boom, Check in on you tonight. Hope you get your scopes today and they find the issue and fix it. God bless!

Ya hopefully they will still do the scopes while you're in there. Why don't they think the inflammation caused the blockage? Did they mention that at all?

Arrg. So frustrating, and partly why I don't like giving updates, because they keep changing. But, I guess u guys already understand that. So, saw the registrar and medical team. Some wanted to operate immediately, others more cautious. They said that this doesn't sound like IBS to them, but they don't know what it is, which - I guess, is why it had been previously labeled IBS, because that's the description u use when u don't know what a bowel disorder is

So sorry Boom!!! I sure hope they don't go sending you home again! be well!

Wait, is the blockage still there? Just hanging around and the doctors are just twiddling there thumbs? A diagnosis can come later if you need surgery. Are they waiting for your bowel to perforate? I'm feeling frustrated right there with you. D:<

I've been passing liquid black D. Its a partial blockage. I had Ensure at lunchtime, and spent last 5 hours with chronic gurgling, nausea and cramps. Not much fun, but surgeon came to say if colonoscopy and CAT don't identify the problem, they will open me up again.

Gosh I am so sorry you are going through all this. With having black liquid Diarrhea, my guess is that there is some bleeding happening in the upper gut somewhere( ulcer??). After reading your story I am wondering if this is all connected to that first surgery you had( the fundoplication). I mean it seems your issues started right after that surgery. The doctors should have investigated back then. Seems like whatever was happening back then just progressed over time. Is your obstruction site close to where you had the surgery? I mean here is the thing, if you are having Black liquid stools and there is bleeding, then it is in the upper gut as that would cause black stools. hopefully they find something when the do the upper endoscopy. But if it is in the small bowel they may not find it with a scope. I can only imagine how frustrated you are. Hang in there, they will get to the bottom of this.

Chocolate Ensure will produce black stool. It scared the bejeezus out of me when I had it one week after colectomy.

Have they tested your stool for blood? I hope they get some answers soon.

Sending hope and prayers your way.

Boom~ How about an update pls???

Quick update: Been in hospital a week now. Had CAT scan yesterday, and colonoscopy hopefully this week. Still chronic D with around 15 per day. A lot of pain around the site of previous 20cm incision. Ensure making me really sick. Tried FortiSip but is also makes me sick. Seen the Gastro Dietician who suggested all the diets I've already tried over the last 18 years. My stomach seems to react to a change in diet and slows down for around a week, then it all starts again. The only diet I've found that works is 'nil by mouth'

In case anyone wonders about my nickname 'Boom'. My family named me that because of the loud passing of wind that often occurs, as well as my interest in home-made fire-works that have been known to shake the neighbourhood (not very good after 9/11!) Also it is the Sweden? name for grand-father (Boom-Pa), and my grandkids also call me Boom

LOL That is funny! I sure hope they find something to help you and a proper eating plan that will work for you. Chicken soup with rice or noodles seems to really help me. I have been living on it nine out of eleven days lately. Flaring now. I keep you in thought and saying a prayer for good news next time!

CAT scan came back clear, which is good - means the blockage is gone and I don't require surgery. Appears it might have been a twisted bowel. It's also bad, that if they don't know the underlying cause of my condition, they are not able to prescribe an effective treatment plan.

I will start prep for a colonoscopy in around 4 hours, and then wait for the results - which I too expect to be clear. What they are suggesting they do after that, is pump me with Codeine, send me home and refer me to GI Out-Patience Clinic for observation.

I am resigning myself to accept that "it is what it is", but I am actually quite upset, being in the same situation I was 18 years ago after surgery.

I thought I might have been able to be helped.

Looks like my expectations are unreal, and I need to change them to realise this isn't going away and it actually upsets me if they still say it is IBS, even with the GI Dr saying this is the worst case of IBS he has ever seen. Just seems that IBS does not do justice to the chronic symptoms I live with on a daily, often hourly basic, but maybe I need to change my view on IBS.

I'm just confused :-( but ready to continue on with life with a chronic illness

I don't get to understand why IBS seem by many as the diagnostic to avoid. I have seen (and I am not pointing fingers to anyone) in this forum more than once individuals presenting their case as Crohn's was a better diagnosis than no diagnosis. I personally would gladly give my Crohn's if I could to anyone who wants it in exchange with their IBS. This does not mean IBS is not grave or anything, I feel for anyone who has a problem. At least with IBS you avoid surgeries, you avoid the chronic anemia, the heavy medication, the severe weight loss, the blocages, colorectal cancer risk 30% after 30 years with colon involvment, the reduced life expectancy, etc, etc and etc... There is a reason why GIs don't give the diagnosis easily, it's a serious diagnosis not to be taken lightly, a lifelong sentence.

There are possible treatments for IBS for those who accept the diagnosis.

Boom, don't take it wrong, but being in a bad flare reading this statment of yours was hurtful: ''I am upset because at least if it was/is IBD, there are more treatment options to try.'' Really?! I'd take IBS treatments over prednisone, immunomodulators and biologics and surgery ANYTIME.

Personally, you should pray and wish it is IBS or at least that it is not IBD. You should pray that your colonoscopy comes with no sign of IBD. Because sure as hell, that's what I would have done in your place.

Just to add, I am not heartless and do understand the pain of those who have severe abdominal symptoms with normal test results.

Hi Tired. I've had surgery, have lesions, three hospital stints with blockages and take a ton of medication that screws with other bodily functions. The diagnosis isn't a big thing for me, rather it can offer treatment, as nothing for IBS has worked over the last 18 years, I've lost over 20 kgs. My surgeon ruled out different IBD diagnosis because it would not result in the acute flare I've been in for the last 18 years

it doesn't matter, suffering is suffering and crohn's is a horrible diagnosis and I got it 3 yrs. ago. But praise God mine is mild compared to most on here. No surgeries so far or heavy meds. Just entocort and pentasa. I watch what I eat and take alot of good supplements. Ginger is one I highly recommend. Because it helps with inflammation and I never ever get colds!!!
I sure hope you get to feeling better soon and God bless!!!

Hey Boom. Read your story. Sorry to hear about this. I've been to the hospital several times for obstruction but it always manages to clear itself before I get into the MRI/CT Scan, which irritates me as I too want them to find what is wrong with me. It sounds like they found a lot going on via the colonoscopies/endoscopies etc. They can't even find my diagnosed (via blood work) Celiac Disease through biopsies. It's so frustrating (beyond frustrating) isn't it?

Anyway, I was curious: have you ever had your Vitamin K levels checked? I am noticing more and more people popping up with this deficiency. I hear it is uncommon in adults, but then again we now have adolescent diabetes. The one big gripe is I don't believe it is covered by insurance. Still, I think I am going to look into it no matter what as so many auto-immune problems mentioned to me personally - by doctors - always mention Vitamin K and Vitamin D deficiencies.

Anyway, I hope you get some answers and soon.

Hello Boom
What a terrible time you are having.
I feel it unacceptable with your symptoms for the GI to dismiss IBD----and feel he is just not right.
There is obviously something seriously wrong and you most definitely need another qualified
opinion.
Never give up....never give in.
Don't accept the IBS diagnosis its not right.
Feel better soon
Hugs and best wishes
Trysha

If you don't wind up getting any real answers while in the hospital and you are sent home to see a GI, when you see that GI maybe you could discuss the possibility of having a Double Balloon Enteroscopy done to look at the small bowel and have biopsies taken. http://www.ncbi.nlm.nih.gov/pubmed/14648408 Unless the hospital GI is willing to do it while you're there.

Glad you're having one scope done at least. Hope it goes well.

KnightRobby said:

Hey Boom. Read your story. Sorry to hear about this. I've been to the hospital several times for obstruction but it always manages to clear itself before I get into the MRI/CT Scan, which irritates me as I too want them to find what is wrong with me. It sounds like they found a lot going on via the colonoscopies/endoscopies etc. They can't even find my diagnosed (via blood work) Celiac Disease through biopsies. It's so frustrating (beyond frustrating) isn't it?

Anyway, I was curious: have you ever had your Vitamin K levels checked? I am noticing more and more people popping up with this deficiency. I hear it is uncommon in adults, but then again we now have adolescent diabetes. The one big gripe is I don't believe it is covered by insurance. Still, I think I am going to look into it no matter what as so many auto-immune problems mentioned to me personally - by doctors - always mention Vitamin K and Vitamin D deficiencies.

Anyway, I hope you get some answers and soon.

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I was watching Dr Oz one day and he was saying how important vitamin K is. Did you know that dill pickles have a high amount of vitamin K? Also dark greens I think, like kale.Some people can tolerate pickles well and some not though.